I am off 2 minds about what it means to keep researchers honest when it comes to disease-related research. On the one hand, I do think advocates should hold researchers’ feet to the fire. If you say you are trying to cure disease X then your work should be clearly connected to curing disease X. I have a personal rule of thumb I use for calculating “connected” — you get 2 or 3 “ifs” and 1 or 2 “buts.” As soon as I hear a string of “if, if, if, but, if, if, but, if then maybe, but…” I know this is not feet to the fire applied research. So what’s on my other hand? I am increasingly of the mind that demanding basic researchers to link their work to diseases (courtesy of the NIH culture) or broader impacts (thanks to NSF) has done much more harm than good. It has distorted what gets done and why. It has created an illusion of knowledge where there is really a gaping hole. it has squandered funds and the hard work of many smart people with good intentions. My remedy: let’s keep it honest. If you are dedicated to helping develop effective treatments for some disease – do it and do it well. If you really want to pursue interesting biology just because – do it and do it well. But please, lets stop doing uninteresting biology that is unlikely to be of any use to anyone.
Recently I have noticed that the glitterati, or those famous for being famous, are tacking on an additional title to “celebrity” – philanthropist. One can visualize the grave-spinning of Rockefeller and Carnegie, two individuals whose writings have contributed much to the 100 year old philosophy of strategic philanthropy. I imagine that in some circles going to charity balls and launching twitter campaigns for the trendy cause of the moment counts as philanthropy. But in reality, as anyone who has worked or volunteered in philanthropic giving – doing it well (read thoughtfully and impactfully) is not easy. Too often, our intuitions of what is likely to be effective against tough societal problems are, well, just plain wrong. Unintended consequences abound. Short term attention can often compound rather than alleviate misery. Mismatching problems and resources can result in the double whammy of barely moving the needle on intractable (or misguided) issues while diverting resources from the tractable ones. I have no doubt that glib-anthropy intends to do good. But we all know the cliche about what road is paved by good intentions. Time to do better.
Thanks to a reader for directing me to a longer and more authoratative blog on this topic. It can be found here:
7 worst international aid ideas” http://matadornetwork.com/change/7-worst-international-aid-ideas/
As a scientist whose professional life is dedicated to funding and advancing science – particularly biomedical science serving society- I have been appalled at the rhetoric in play regarding the supposed “lack” of funding for science. To say that flat budgets or slight budget cuts is decimating knowledge generation in the US is completely ridiculous. For prominent researchers to claim that every experiment of every stripe is curing alzheimer’s or autism should cause embarrassment. To say the cuts are causing the US to “lose a whole generation of scientists” is, quite simply, untrue. I have seen no shortage of bright, young scientists entering PhD programs. The overproduction of biomedical scientists has been true for at least several decades so blame the lack of career paths on the sequester is pure PR. Academic scientists know the truth. Much of basic science research is unlikely to move the needle on treating devastating, complex diseases sny time soon. For example, recent studies have shown that many neuroscience findings are unreplicable and non-translatable. In part this is contributing to the slow development of new treatments for neurological disease. There is danger with tying basic, discovery science to treatments or economic development, or any or the other rationalizations I hear. Searching for knowledge is a core human trait. Seeking the truth about our natural world is why most of us are drawn to science. To reduce truth-telling to “say anything” breeds cynicism. My fear — it is the cynical twisting of reality that will lose us the best and the brightest.
I am flabbergasted by the messaging surrounding the new Brain Map Initiative.
If I didn’t know better I would think that neuroscience as a field of inquiry simply did not exist. There is a strong and robust effort in computational, systems, and cognitive neuroscience research ongoing and in fact already doing much of what is being promised. Rockefeller, Harvard, Columbia, Stanford, Salk/UCSD already have huge efforts looking at circuit level neuronal function across model organisms. And this is the tip of the iceberg. There are already hugely expensive functional brain imaging projects. Brain research garners billions of dollars internationally each year. So what is going on? The cynical view is of course that this is simply a resource grab orchestrated by individuals who see an opportunity to increase their influence and stature. And what about all the promises to cure Alzheimer’s, autism, schizophrenia, PTSD, traumatic brain injury? Disease organizations have been buying one magic bullet solution after another for 50 years to what end? Recently the chickens have been coming home to roost with little to show for the billions and billions invested (aside from a very successful jobs program) as many dominant theories fall short. So the cynicism ghost whispers that this is a way to deflect the criticism because this new promise is going to REALLY solve the problems. It is so sad. And saddest of all is that one really does not want to be cynical. Knowledge acquisition and its responsible application is a noble human pursuit. But it is one that works best when pursued with humility.
I just came across this news piece
Those of us who live at the intersection of society and science know that one of the most serious problems impacting health around the globe is the increasing rates of obesity. Even in some developing countries the incidence of heart disease and type2 diabetes in increasing as a result of the expanding availability of Western-style calorie rich but nutrient poor food.
Why do we expect food to be cheap? Why do we desire cheap food? Sure I have read all the evolutionary just so stories about how we are hard-wired to eat. But those explanations tell us why we desire plentiful food. They do not explain why we want cheap food.
Cheap food – over processed and of dubious nutritional value is probably at the heart of much of the chronic disease with which we struggle. Could it be that people really don’t understand that you get what you pay for? Food should be expensive — it is what sustains us. It is nourishment. What I find most amazing is the folks who would never dream of drinking a can of some cheap soda, or a cheap bottle of beer, or a glass of jug wine are happy to line up for cheap food.
Please Olive Garden — don’t serve cheap food. If you must cut costs, provide less of good food. And with your advertising you can help educate a public that has forgotten how to value a basic requirement of life.
Well 2012 has come and gone. 2013 is old news. It has been a long time since I have had anything to say. Wait, that is not totally true. I rant at least once a day; sometimes more. I have alot to say. I think what has stopped me from posting is that I don’t feel like I have anything new to say. Nor are there any new problems. Biomedical science keeps promising more than it can deliver. Funders keep funding biomedical science because we humans have a cognitive module that wants to believe in mythologies. We love the myth of the lone genuis scientist working in the garage, blackballed by peers, until rescued by a $35000 grant due to the boldness, riskiness, thinking outside the boxness of charity X. We are afraid to question the “diseases are complex, yadda, yadda” so now let me tell you about my molecule likely to cure everthing from cancer to insomnia to male-pattern baldness. What mere mortal can question the wisdom of the biomedical scientist-genuis with 500 publications? There has to be the holy grail, the sword in the stone, the genie’s lamp — what if the magic bullet is right there, inches away, and we change course? Do funders dare to question the failures? No, because then the strategy is to repeat and repear until saying it enough times makes it true: failures are always the fault of too little funding.
The devastation and misery on the East Coast will cause many philanthropic organizations to consider doing something for disaster relief. This is only natural as the desire to deploy resources to alleviate human suffering in the driving motivation behind what we all do. Resist. Philanthropy is not charity. Palliative acts (e.g.feeding the hungry) are not the same as alleviating the root causes of problems. Rather than giving to charity – consider what the philanthropic approach might be. How can we better be prepared and respond to natural disasters. One question that comes up for me is the great enthusiasm I have seen for incentivising people to increasingly live in large urban centers (anti-suburban sprawl moevments are part of this, as are green transportation efforts, etc). I worry that we have not put enough thought into what happens to mega-cities when disaster strikes. There appears to be a special fragility to perturbations evidenced when large, densely populated “corridors” meet with natural or man-made disasters. Maybe sprawl in not the answer – but I think my preference for living is a small to medium sized town with transparent local governance. Now – funding research on this question and providing un-boased data for planners – now that might be a good investment for philantropy!
WHen talking about the work we do in philanthropy we often say we are investing in the acquisition of new knowledge and its responsible application. In other words, research and scholarship. But is knowledge acquistion and research necessarily the same thing? Unfortunately, in some disciplinary arenas research can become so derivative that it can be successfully argued that the findings are no longer contributing new knowledge. In other arenas the research directions have become so wacky and disconnected from any of the constraints of reality that it is also questionable as to the whether the findings constitute “knowledge.” There is also research where the findings may or may not represent new knowledge but the interpretation of the findings or the explanations attached to them represent anything but. I hope philanthropic investors are becoming increasingly savvy at parsing the distinctions made above. Too often the academic research enterprise is more about the packaging of products than it is about contributing to deep and real knowledge about the natural world.
This week brought the incredibly sad but not really unexpected news that the bapineuzumab trial, one of a series of drugs being tested in the search for long-hoped for breakthroughs in the treatment of AD, was being halted for lack of efficacy. http://www.msnbc.msn.com/id/48547963/ns/health-alzheimers_disease/
Why did I write “not really unexpected?” Because the results are not surprising in light of the failure of similar agents from similar trials. No one likes writing this — there is not a single individual I know in the neurosciences and in neurological disease research that would have wept at the news of a successful outcome. But, it is also time for the neurodegenerative disease community to burst our hypotheses about AD wide open and be willing to pursue heterodox ideas and alternative approaches. I have written this before and I know how difficult it is to write it.
But there has, from the very beginning, always been conflicts and contradictions within the Amyloid hypothesis. There has always been questions about the over-use of rodent models (particularly rodent models developed with circular reasoning) for what is quintessentially a human disease. It is painful to criticize the brilliant men and women who have spent decades dedicated to research. It is hard to fault the Pharmaceutical companies who have spent millions and millions of dollars on trials. It is heartbreaking to consider the patients and their families (and in truth, who among us has not been touched by this horrible disease?) when they read the disappointing news. In the end, however, I do believe science can win. But we can’t turn any ideas away. The philanthropic organizations dedicated to advancing AD research and treatements have an obligation to seek alternative approaches and create an environment receptive to boldness.
Regardless of whether you cheered or booed the recent Supreme Court decision on the Affordable Care Act – reading the opinions provides a valuable lesson in federalism and distributed decision making that Foundations would do well to review. I’ve written about this before -but sometimes it seems to me that non-profits have lost sense of why it is that they are tax exempt. In reality private foundations could simply turn all their assets over to the Federal Govt and let the Govt dole out grants for the arts, or for science, or for service organizations. So why do we have a tax code that encourages tax exemptions for gifts to charitable organizations? It derives in part from a tradition dating back to the founding of this country – that is that NOT all decision making should rest in the hands of a central government. Having a host of decision makers involved in charitable activities encourages diverse decision making and ensures a variety of approaches. Non-profits would do well to heed the characterization of non-profits “…as not business and not government.” We who work in this sector should ever be on guard to defend its independence through our actions.29